Hannah’s Choice: A daughter's love for life. The mother who let her make the hardest decision of all.. Hannah Jones

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СКАЧАТЬ and nursery. We lived in a new house on a little estate and went on holiday once a year. It was a busy, run-of-the-mill life until we stepped out of the lift into the long corridor leading through Birmingham’s paediatric oncology unit for the first time and I knew nothing would ever be the same again.

      Hannah was lying on a stretcher and I looked up to see a little girl walking towards us. She must have been about ten and was stick thin – a pair of shorts hanging from her hips and a white T-shirt dropping in folds around her body, her head completely bald. She looked like a ghost as she pushed a drip stand, and my breath caught as I stared at her. Just the day before I’d been planning for Christmas because it was only a week away. What toys to buy? What food to cook? Did I have enough to fill the children’s stockings? Did I have too much? But now this world had disappeared completely and it had taken just one word to shatter it. Four syllables. Leu-kae-mi-a.

      As Mr Williams talked us through Hannah’s diagnosis and treatment, he’d shown us a red file containing pages of tiny typed words listing all the different forms of chemotherapy and their side effects. Hannah’s leukaemia would be treated by six rounds of chemo which would last about a month each and all follow the same pattern – after an initial burst of intensive drugs over several days, Hannah would continue on a lighter cocktail of medication for another ten before being given a ‘rest’ of about another ten days to allow her body to recover from the onslaught. It was like a war: a period of intense battle followed by a retreat and regrouping before the fighting began again. All we could do was wait to see if it would be enough to save Hannah’s life.

      ‘We hope Hannah will quickly go into remission,’ Mr Williams had told us. ‘But even if she does she will have to complete all six chemo courses to give her the best possible chance of long-term remission.’

      Andrew and I had listened as Mr Williams warned us of the possible side effects the powerful chemo drugs could trigger because they would attack the healthy fast-growing cells in Hannah’s skin and digestive tract as well as the cancerous ones. The chemo might cause anything from hair loss and nausea to skin changes and tiredness. Hannah’s immune system would be so depleted by the highly toxic drugs that any tiny infection could be serious.

      There was also the possibility of more extreme side effects like an increased risk of thrombosis or heart damage. But they were remote – the stuff of warnings listed on an aeroplane safety card which you barely glance at as you settle back in your seat. We didn’t have a choice. We had to fight the enemy that was here and now. If Hannah didn’t have the drugs, we would certainly lose her.

      ‘I don’t feel well, Mummy,’ she’d cried when she’d woken up after Andrew and I had returned to her bedside. ‘My tummy hurts.’

      She’d hardly been awake since the night before. Too ill and drowsy to know what was happening.

      ‘We’re in hospital, darling,’ I said softly as I bent towards her. ‘You’re poorly.’

      She stared at me.

      ‘There are bugs in your blood and the doctors are going to give you special medicines to fight them.’

      Hannah looked at Andrew and me, her eyes huge in her white face.

      ‘Will they taste nice?’ she asked.

      ‘These are special medicines which you don’t have to swallow,’ I replied.

      ‘Will they make me better?’

      I paused for a moment. I had a choice now: lace the truth with uncertain hopes or speak it gently but honestly on this, my first step into the unknown with my daughter. Hannah had to trust me completely. I couldn’t start lying to her now.

      ‘We don’t know for sure, but we hope so, Han.’

      Andrew and I looked at each other. There was nothing more to say.

      As soon as Hannah started chemotherapy, it quickly became clear just how much the treatment was going to affect her. The chemotherapy drugs had to be administered day and night through two bags labelled with words like ‘Toxic’ which hung from drip stands beside her. Each ran in turn down the central line into Hannah’s heart, which was washed out with saline whenever the drugs were switched to ensure they did not mix. Within days, she had started passing blood clots or vomiting them up as the skin on her inner digestive tract disintegrated.

      It is one thing knowing your child must have life-saving treatment but another to watch them have it. The cries of children too young to understand what was happening cut razor-sharp through me and at nights the buzz of the day disappeared and soft sobs filled the silence. But the only time Hannah cried out was when the drips and lines going into her veins caught as they were moved. Otherwise she lay still and her silence was almost worse than screams. It was as if she was too sick to even make a sound, too weak to express her pain in any way, and I wished I could climb inside her mind and know what she was thinking.

      Time disappeared. I didn’t think of the next chemo cycle, next month or even next week. I knew Oli and Lucy were being looked after at home by Andrew and his parents so I focused completely on Hannah. My days were lived waiting for her latest blood results: white and red blood cell counts, platelet levels and HB ratings. Leucocytes, basophils, eosinophils, creatinine levels…the list of blood cells and other physiological markers was endless. Each morning a blood sample was taken, and after the results came back soon after lunch I’d write down the figures in a pocket-sized book – lines of numbers running like Chinese shupai down the page which told me about the minutest details of my child’s fight with the disease inside her.

      The tiny figures became my talismen and I’d wait anxiously each day until the small hand hit the number two on my watch face and it was time to walk to the nurses’ station to ask for news.

      ‘It must be busy in the labs today,’ someone would smile. ‘They’ll be here soon.’

      Pushing down my impatience, I’d walk back to Hannah’s bed. But in my desperation for news I wasn’t any different from every other mum on the ward who also pored over the figures when they got them. Did their child have an infection? Was their red blood count coming back up? Or their white count going down? Some couldn’t decipher the list of intricate numbers and asked me to explain after realising I could help. I understood why they wanted to know what the endless figures meant: they were the one piece of fact we could hold onto amid so much uncertainty, and understanding the numbers felt like some small practical way to help our child at a time when there was so little else we could do.

      Otherwise I spent hours sitting beside Hannah, longing to get onto her bed and lie beside her like other parents did with their children but unable to because she didn’t want to be touched. Hannah’s senses were so heightened that her skin was incredibly sensitive and I found it hard not to physically reassure her. I wanted to cradle her just as I had when she was a baby, feel her weight against me and soothe her. But Hannah did not want to be hugged and she did not cry out for me either. She lay in a cocoon of silence, as if willing herself to live, while I sat within arm’s reach, close enough for her to feel my presence. The hours slipped by with the television on low as she slept and when she woke I would colour in a picture so that she could watch, or read a story for her to listen to.

      Too ill to eat, Hannah was fed by a high-calorie feed which dripped slowly into her nasogastric tube from another bag on a drip stand beside the bed. Thick and sticky, the feed had to be covered in brown paper to protect it from the sun because light could alter its delicate chemical balance and we quickly got used to this strange kind of nourishment, just as we did the rest of our new life. After that first shocking sight of the little girl walking towards me, СКАЧАТЬ